Impact of the diagnosis of heart failure

How people responded to their diagnosis of heart failure varied, and this could depend as much on the kind of information passed on by doctors at the time of diagnosis as on the diagnosis itself. One woman described her despair at realising the severity of the illness; she had cried and asked to go home. Reassurance from a doctor or nurse about what could be done to help could support people through the diagnosis.

He was very nice and he came in and closed the curtains and he, he just told me in a nice way that I had chronic heart failure. Do you know, I can’t really remember but I do know he was very nice.

How did you feel at that moment? Were you scared?

Yes I was. I couldn’t believe actually being told by your doctor that, that I’d had, you know, that I had this. I just thought it was something else that I’d picked up a bug or there was something wrong, I didn’t realise it was as serious as what, as what it was. He also told me that it was terminal and I think that’s what got me the most because I didn’t cry and I was brave, my daughter was there with me but I was gobsmacked to think that the one that, I had.

And although I know this operation has helped me, I know it won’t make me better but I’d rather be told something that was the truth than not to be told. A terminal illness, that I wasn’t going to be able to get better.

Did you feel easy or less frightened after he talked to you or not?

Well no I was still in shock because I’d just been told and then the first thing I thought was after he’d gone out from behind the, away from the curtains and that and I was left on my own with my daughter, the first thing I thought was, “Oh I wonder how long I’ve got.”

Have you asked your doctor about that?

Yes and I’ve been told they can’t tell , some people can last for twenty years, it could be ten to twenty years, they don’t know. Every person, it’s different with…

But actually I think well, with what’s wrong with me and even after the operation, if I’ve improved because they know how much my heart is pumping and working properly, I think, surely they must have an idea dealing with this every day with patients, they must have some idea although they can’t say exactly, nobody can say but I think they must have some idea and if they did, I’d rather know because, to get my house put in order. You know, if I was told you’ve got twenty years unless you get knocked down by a car, or it could happen anytime from three years to twenty years, well I’d just rather know because with me living on my own and having two daughters, there would be lots of things I’d have to talk to them about which because I look so well and everything, I think half the time they don’t maybe; my eldest daughter, they both know what’s wrong with me but maybe they don’t realise some things, you know, so one way or another you know I, I would just, if the doctor’s had any idea, I would be the first to say, “Well I’d rather know than not know.” Not to worry but just to put things in order.

Have you talked to your GP about it or not?

Yes I have and Dr [name of GP] said to me, he’ll, he said, “Well everybody is different.” You know, you could be twenty years, you could go on to live a long and fruitful life.

Yeah, so …

So the doctor at the hospital and Dr [name of consultant] has said the same and I know nobody can say but if they had any idea, you know, I think it would be nice for, well in my case, not nice but I would rather know.

It was often shocking for people to discover that they were seriously ill and hard to take it all in immediately. One woman said she felt very angry and thought 'why me?' but that the cardiologist gave her plenty of time to ask questions. Common reactions included feeling stunned, startled and numb; the first thought several people had was “how long have I got?” One man said he was so shocked by the news that nothing could be done for him that he couldn't think of anything to ask.

No, I wasn't familiar with the term 'heart failure' because it's something that's never crossed my mind. If it was something to do with sinuses which I was aware about I would have know about it, in fact I do, but because it hadn't ever crossed my mind anything was wrong with my heart at all, I was completely ignorant of all heart aspects, not just heart failure, and I asked them to do an awful lot of explaining, which they did, they were excellent, the cardiologist was brilliant and he gave me a lot of time. He was very very good, and I was extremely upset, I was angry. It was the 'why me' factor isn't it? Why? I've led a good life, I've worked hard, haven't smoked, haven't drunk, I've got on with everything, I've been widowed for 27 years. Why should this happen to me? I can't understand it. I couldn't understand it. It's taken me more than a year to still too by the way. So he sat down because I was really upset. When I first got told, I was in bed in hospital and the consultant was such a kind man and he sat there and he hugged me for nearly an hour, talking to me. He was absolutely brilliant.

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Age at interview:

49

Sex:

Male

Age at diagnosis:

44

Background:

Unemployed; married with 3 children.

I thought I was dying! Yeah. That's the first thing you think you know - I've got the heart failure and I'm dying - how long have I got? How's it going to affect the family... all the things go through your mind the first month or so.

I was convinced, I'm not going to sleep I'm going to die, I'm not going to waken up. They've said I've got heart failure, does that mean I could go for a bus and just die at the bus stop? I think for a layman it's hard to take in when somebody says, 'You've got heart failure', you don't understand it - the term. The doctors will explain that, explained it and explained it but I find it hard to take in! To me it's a bit of double dutch! I don't know you know, I think the word 'heart failure' frightens anybody. It's like the word 'cancer', anybody's got cancer it's everybody's terrified - 'I'm going to die- but some do some don't!

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Age at interview:

66

Sex:

Male

Age at diagnosis:

64

Background:

Retired factory manager; married with 4 children.

And I found out afterwards it was like a diseased part of my heart, not like a narrowing of the arteries or anything like that. It was a part of my heart, well when I had my angiogram they told me, the doctor came round and there was about ten of us they were angiogramming the same day. And.. a lot of people tell you it's frightening but it's not really, it's just one of those things. You need it to be done, you know what I mean? Once it's over, it's okay, not painful. But he was telling the other people 'You need a triple by-pass' and well 'You need a stent going in to this artery', and he came to me and he said, 'We can't do anything for you'. He said, 'You've got a diseased... the back of your heart is diseased and your muscles are not working. And one of your arteries is diseased'. So he said, 'There's nothing we can do'. He said, 'The only thing that would help you would be a transplant, but we don't consider transplants for people over 60'. Now that shocked me, to be honest. You know, I just, I sat there rather numb and I couldn't think of a thing to say because he said, 'Any questions?' Now, how can I think of anything to say to him, to a chap who's just told you more or less you've got no chance of living, you know, no cure. So I was really on a down then for a couple of weeks.

If people already understood something about their heart failure - for instance if they had had their tests explained to them or knew someone else who had heart problems - this could help reduce the fear. Several were able to ask doctors questions straightaway and had felt reassured that something could be done, and several determined to carry on with life as before. Another worry was thinking about the future security of their families, and one person said because he was concerned about his family he wanted to know his prognosis.

Yeah I kept on looking forward, looking ahead and I had a very optimistic view to life. Never looked back at the trauma I had in 1992 and before 1992. And even in 1999, when they said, 'You have heart failure,' I said, "Fine, I'll manage, I'll survive and I'll...'. You know I was a survivor, a really a great survivor in 1992, because I remember one of my consultants saying, reviewing my notes in 1995 saying, "I can't believe you're still around," [laughs] I said, "Thanks doctor [laughs] that's very cheerful!" And you know, you know I've tried to live as normal as I could be.

As I said to you in 1999 after I came back from my holiday in the South of France went straight the next day to the rapid access chest pain clinic at the hospital. Soon after that, that day, I stayed the whole day in the hospital, and they said, "Now you're, you've heart failure and you've got monitor your lifestyle and you have to watch for A, B and C and D. Food, drinks you know everything you have to watch it carefully and you have to monitor that." Then I mean they said to me, "You've got heart failure.' That was in 1999, and the actual, the actual term 'heart failure' its a bit, a bit of a..you know it came to me as a bit of a shock, oh 'heart failure' this is, my first question was to the consultant, "How long have I got to go?" [laughs] he said, "No don't worry it's not, you know it's called heart failure because the heart doesn't have the full capability to pump as much blood as it should and you know nothing should, you know you shouldn't worry about, I mean obviously you have to keep it in mind that you've got that, but you know you shouldn't like think about death every day." And I laughed and said, "Fine okay I'll manage that."

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Age at interview:

59

Sex:

Male

Age at diagnosis:

58

Background:

Retired GP; married with 2 children.

Well [pause], the point is I needed to know why, because one of the main concern of course when you have responsibilities of a wife and family is that you take any appropriate steps that need to be taken to secure them. And a lot of the illnesses which cause sudden heart failure actually are quite serious, and prognosis is poor, cardiomyopathy for example. So... drifting into heart failure and then having a big heart, cardiomyopathy, was actually the more probable of the diagnoses. That meant I probably wouldn't live perhaps beyond a year. So... for me it was to sort out a diagnosis, then to see was there treatment.

The impact a diagnosis had on partners and children also varied. One response from families was to try to cover up their devastation by putting on a brave face. Sometimes close relatives started to worry about their own state of health. A few people said their adult children became anxious when they wanted to know things about the illness that their parent/s couldn't answer and several were keen to get a second medical opinion; for instance two women who spoke little English were sent by their children for private medical consultations, tests and treatment. Although other family members often rallied around, in the end it was usually the wife, husband or partner of the sick person who shouldered the responsibility for helping their spouse come to terms with heart failure (see 'What carers think').

They were devastated and you know they were all thinking the worst, you know what I mean? Because obviously, you know my parents ain't got no heart condition, my grandparents never had any heart conditions, as far as they were aware, so this is like all a shock to them.

And then inherited, or whatever he said it was, like I was born with it, so I'm saying, 'Well, bloody hell, if I'm born with it, how come they ain't noticed it before?' sort of thing? But obviously they ain't going to notice it, if you ain't got no complaints, you know what I mean? You know, what was that guy on the football field, 28, died, you know what I mean? He's a fit, athletic person, he's supposed to have had a medical, right, to be playing football and he passed away. And he's only 28 so you know it can happen any time, you just don't know!

Well, it was like tearful and then wanting to see Daddy straight away and all this, you know what I mean? And in the end I just told her, I said, 'Listen, you know I'm here now all right, so just be cool, just behave.' Because it was like stressful for her, you know what I mean.

It was stressful for all of them really, because my Mum and Dad they were like coming up with the smiles, going out with a worried face, worried attitude. My sister, who's my twin, same kind of thing, so's my brother. He started to get panicky now when I says it could be in the men-gene in this family, sort of thing.

So everybody had their own little agendas to deal with, you know what I mean. But whatever happens, I just, all I can say is that you need to be, you as a patient need to be positive and you've got to let that positive come out because otherwise you're going to get all your people around you starting to worry. And it's just going to cause them to an earlier grave, isn't it really? So as much as sometimes it may hurt you to find that oh gosh, why me? Then I think about the others around you because they're going through it as well, if not more than you.

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Profile Info

Age at interview:

78

Sex:

Female

Age at diagnosis:

70

Background:

Wife and mother; married with 3 children.

(This interview was conducted in Punjabi and the transcript translated into English.)

After that I got even worse and my middle son-in-law said to my daughter, 'This isn't right. We need to have mum looked at in a private hospital. The other doctors don't seem to do anything.' So then they got me to see a private doctor, they took me there, it's a private hospital in [place name]. They took me there and there they examined me. They did an angiogram, they did an ECG, they did everything. They tested me for everything there, and they even took me to [place name] where I had another angiogram. From the angiogram they told us that one of my arteries/nerves/pipes was blocked. After doing the angiogram they also inserted one of those tubes inside me, those ones that help to keep the pipes clear. I was extremely weak and they said that they wouldn't be able to operate on my heart, that if they attempted a bypass it would be too risky to my life.

They didn't do a bypass?

No, they didn't do a bypass. No, they did an angiogram and an operation here and inserted a tube here, and you know those balloons, they inserted one of those balloons. And since then I've been a bit better, not loads because every now and then I still have one of those episodes but it's not so intense. Now in fact the doctor, the doctor who did the angiogram was actually based in [place name], and there's an Indian doctor there, he was the one who did it.

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Profile Info

Age at interview:

84

Sex:

Female

Age at diagnosis:

82

Background:

Mother and housewife; widowed with 1 child.

(This interview was conducted in Punjabi and the transcript translated into English.)

The clothes that I was wearing were the ones I went to hospital in. They took me in a wheelchair and put me on a stretcher and we went to the hospital. My sister's son had also arrived and I asked him to come with me and stay with me because I was scared. He told me that there was no need to be afraid, the doctors would examine me. So I went to hospital and there they took some x-rays and did lots of tests. I don't know what exactly they were testing, blood tests, etc.

Before that time, actually, I'd had my blood tested ten times. I don't know why though. I kept on asking what was wrong but they would never say what was or wasn't wrong. In this way, having tests and more test, quite a lot of time went by and I myself thought, 'Oh well the problem would go away itself, after all it's only acid indigestion.' But on this occasion they kept me in hospital for four or five days, giving me different medications, doing different tests, and I started feeling slightly better. On feeling better I came home, with medications, and one day the doctor actually visited me at home. But those medicines did make a difference.

After that I went to America. I discussed it with the doctor and told him that I'd really like to go, my son and grandchildren are there, and when my son learnt I was in hospital he kept on phoning because he was very worried too and wanted to visit me. He asked if he should come over but I said, 'No, don't you come over, there's no need. I'll come to America by myself. From this side I'll be very well looked after.' The nurses were told everything and the flight attendants and they really looked after me.

Did a nurse go with you?

No, no, there were only the airline people, their staff took care of me. So I got to America and my family had me checked out by a doctor there. And the doctor said that I was taking the correct medications and that I would have to take them for the rest of my life. I told him that with the medications I do seem to be a lot better. And in America I generally stayed in the house, I carried on taking the medicines and I stayed there a month, just less than a month. And I came back here because there my healthcare was extremely expensive and so I didn't want to stay. I wasn't registered there either, nothing, it was all done privately by my son.